It is confusing isn't it. Do you know what other types of viruses it could be cross-reactive with? I have read that a lot of LD's consider the IND as a weak positive result, so I am going with that. I don't want to wait 4 years and then find out I should have acted. I feel that I have already waited too long. My doctor also kept thinking of lyme's and tested me with our inaccurate elisa testing, twice. I have gone to an endocrinologist, internest, ENT and of course neurologist and they really are stumped with all of my symptoms. I want to move forward. I hope you let me know if you find anything and I will do the same. Keep on looking because you are your best advocate!
It has been productive talking to you -- you are so wise.
crystalv said:
Collette, that is one of the links I was using! Great minds... :)
So it's controversial whether or not one band means your positive. Right above the part you quoted about only needing to have one of those bands, it says,
"If results from the initial Western Blot are positive for bands 30 or 31, it is possible that these could be due to cross-reactivity with several different types of viruses.
That implies that 30 and 31 are not Lyme specific, which contradicts what they say right underneath it. It IS confusing. I've just recently began trying to understand it all.
I didn't have any indeterminate results, just the positive for 23IMG and 58IGG. I show no symptoms but I've been noticing a link between facial pain patients and Lyme disease, which is why I got tested. So I think that an LD would say I don't have it, since I have only one band and no symptoms.
But that pesky 23 band concerns me. I'll post when I see what my partner's results are. I'm thinking (hoping) that everyone tests positive for one or two of the bands.
Do they want you to start an antibiotic? That's usually the first step (at least for a newly infected person), and it would be interesting to see if your results are different after the antibiotic.
Yes, he said Biaxin 500mgm twice a day for 30 days and that there can be a Herxheimer reaction in the first week from the initial large numbers of spirochetal kill off from the release of endotoxins but this will settle by the end of the month.
After reading a post on that site of someone else who showed positive for band 23 only, if I were you I would have another test done.
I will let you know.
crystalv said:
Thanks, Collette. Keep me posted.
Do they want you to start an antibiotic? That's usually the first step (at least for a newly infected person), and it would be interesting to see if your results are different after the antibiotic.
After all you have been going through, I hope that the antibiotics help.
I just wanted to mention that there was a great discussion on NPR (national public radio) - the Diane Reame show about Lyme disease. If you google it, you may find the interview and maybe some good information.
collette said:
Yes, that is that mine showed as well. Did you have any Indeterminate results? This link is just explaining what the western blot test means and how a LD usually reads it. From what I can see a regular doctor takes an overall negative as negative, whereas a LD uses it with a patients clinical symptoms to make a diagnosis.
Jennifer G said:
It doesn't say on the report that band 23 can be confused with an autoimmune disorder. It says that people with auto immune disease can get a false positive. My report was broken down by bands and each was listed as either negative or positive.
I live in Metro Vancouver and have suffered with TN1 for more than ten years. I had an MVD in June 2009 with excellent results (no pain) for approximately one year. The pain gradually returned to the point where I went back on Tegretol and Gabapentin to control the pain. I am now scheduled for a second MVD August 2012. The first MVD was performed by Dr. Kaufmann at Winnipeg Health Science Centre and the second will be done in Vancouver at VGH. I went to Winnipeg for the first MVD because Dr. Kaufmann has a very good reputation and the excessively long wait to even see a Neurologist in Vancouver, let alone a Neurosurgeon. Now that I've had one MVD I was taken more seriously for the second one and avoided the long wait in Vancouver.
From what I understand the contrast MRI offers the best results for observing the trigeminal nerve and surrounding blood vessels. The MRI is used for eliminating things such as tumours and other such things that can be impacting the trigeminal nerve.
There is a big difference between a Neurologist and a Neurosurgeon. I've had a Neurologist look at one of my MRI's and say that its clear and no abnormalities. My Neurosurgeon looks at the same MRI and says that it shows no tumours or other such things but it does not rule out blood vessels impacting the nerve. The technician reading my MRI did not even notice the shredded teflon from my first MVD and did not mention it in his report. MRI's are only one tool in elimination and viewed differently by the person who is reading it. Just because the MRI is clear doesn't mean you don't have any pain.
You want to be talking to a Neurosurgeon not just a Neurologist.
I would also be looking for a doctor who will deal with the two issues of Trigeminal Neuralgia and Lyme's Disease as separate issues until it can be clearly determined that the two are related. Trigeminal Neuralgia is easier to treat by a surgical procedure if there is something like a blood vessel impacting the nerve. That's why its not possible to treat TN surgicaly for people who also have MS which Lyme Disease may also fall into this category.
I was told by my surgeon that people presenting with burning facial pain compared to the stabbing electric type pain are more difficult to treat and he does not perform MVD's on them. TN1 strikes out of the blue with little or no warning and is a stabbing electric type of pain that literally brings you to your knees and stops as quickly as it started. There are a variety of trigger points and people learn quickly to avoid what triggers the pain.
I can only relate what my symptoms are and how I deal with it. I pray that the second MVD will rid me forever from this torment that has taken over my life. I do not relish living the rest of my life medicated to control the pain of TN and therefore I'm having the second MVD.
If I can be of any further assistance please don't hesitate to contact me.
My neurologist will eventually refer me to a neurosurgeon once I have this neuralgia for 1 year. He feels that it is a virus causing it but has ordered the contrast MRI. I have the stabbing electrical pain as well as the burning in the ear. I have many triggers and did learn very quickly what they are and I have found after being on tegretol, it has pretty much taken care of most of the stabbing electrical pain but the burning is back and I find the wind trigger is hard to control given where we live. I am struggling to get a lyme medical doctor and my GP keeps sending my info to infectious disease specialists that don't feel that Lyme even exists or will not even consider seeing me if the elisa test is negative. I would love to know who your neurosurgeon is and what his beliefs are on Lyme and who is treating you for Lyme. I also would like to know if you had the western blot done in the US.
I hope that your 2nd MVD is successful so that you can carry on pain free for much longer than one year.
DieselJimmie said:
Hi Collette,
I live in Metro Vancouver and have suffered with TN1 for more than ten years. I had an MVD in June 2009 with excellent results (no pain) for approximately one year. The pain gradually returned to the point where I went back on Tegretol and Gabapentin to control the pain. I am now scheduled for a second MVD August 2012. The first MVD was performed by Dr. Kaufmann at Winnipeg Health Science Centre and the second will be done in Vancouver at VGH. I went to Winnipeg for the first MVD because Dr. Kaufmann has a very good reputation and the excessively long wait to even see a Neurologist in Vancouver, let alone a Neurosurgeon. Now that I've had one MVD I was taken more seriously for the second one and avoided the long wait in Vancouver.
From what I understand the contrast MRI offers the best results for observing the trigeminal nerve and surrounding blood vessels. The MRI is used for eliminating things such as tumours and other such things that can be impacting the trigeminal nerve.
There is a big difference between a Neurologist and a Neurosurgeon. I've had a Neurologist look at one of my MRI's and say that its clear and no abnormalities. My Neurosurgeon looks at the same MRI and says that it shows no tumours or other such things. The technician reading my MRI did not even notice the shredded teflon from my first MVD and did not mention it in his report. MRI's are only one tool in elimination and viewed differently by the person who is reading it. Just because the MRI is clear doesn't mean you don't have any pain.
You want to be talking to a Neurosurgeon not just a Neurologist.
I would also be looking for a doctor who will deal with the two issues of Trigeminal Neuralgia and Lyme's Disease as separate issues until it can be clearly determined that the two are related. Trigeminal Neuralgia is easier to treat by a surgical procedure if there is something like a blood vessel impacting the nerve. That's why its not possible to treat TN surgicaly for people who also have MS which Lyme Disease may also fall into this category.
I was told by my surgeon that people presenting with burning facial pain compared to the stabbing electric type pain are more difficult to treat and he does not perform MVD's on them. TN1 strikes out of the blue with little or no warning and is a stabbing electric type of pain that literally brings you to your knees and stops as quickly as it started. There are a variety of trigger points and people learn quickly to avoid what triggers the pain.
I can only relate what my symptoms are and how I deal with it. I pray that the second MVD will rid me forever from this torment that has taken over my life. I do not relish living the rest of my life medicated to control the pain of TN and therefore I'm having the second MVD.
If I can be of any further assistance please don't hesitate to contact me.
My TN has nothing to do with Lyme Disease, it is blood vessels and arteries that are impacting on the trigeminal nerve. Also the shredded teflon from the first procedure may have shifted exposing the nerve again. Making you wait for one year is a bit extreme if you are suffering now and on medication. I'm not sure where you live but you could be waiting another year after your doctor decides to send you to a Neurosurgeon. If you wish you can contact me directly at my E-mail: ■■■■■■■■■■■■■■■■■■■■■■
It turns out I have Rickettsia which causes Rocky Mountain fever and is a co-infection of Lyme disease. I am also being tested for other co-infections. I started doxycycline and have been slowly reducing the tegretol for the last 3 weeks. I had to stop taking it due to the extreme nausea but after a week, I had a lot more energy. I am on another antibiotic which I will take for a month and so far I continue to improve. I can also tolerate a breeze/wind a lot better. I am very hopeful!
Happy to hear your news of a diagnosis Colette! Hope your treatment alleviates all symptoms! Bet your thrilled to be getting out of the Tegretol fog! ; )
(( hugs )) and continued improvement!
I wish that everyone could rid TN. In a way it was a blessing to get for me because if it had not of rocked my world so much I would not have been so determined to find out what was wrong with me. TN is one of many of my symptoms but by far the absolute worst. In my opinion everyone who is newly diagnosed with TN should be checked for Lyme disease, Rickettsia, Bartonella and other co-infections and be given antibiotics while waiting for the results.
I will keep you updated and wish you hugs and pain free days!
You are definitely not to young for TN. I just got diagnosed with ATN which includes TN. I am a healthy (previously) 23 year old. From reading this site and from experience, I feel that slight breakthrough 'mirror' pain is not uncommon. I too am scared of taking the meds for the rest of my life (I take Neurotin.) But the are the best option compared until they either stop working or the side effects become unbarable. I am especially scared of damaging my memory. I have always been considered intelligent and don't know who I would be without that. Yet surgery is just as scary. I could even make the pain worse... I have also been told that I will probably not have neuralgia forever. Just take it one day at a time. Rejoice that it is a possibility. There is very little literature on younger people having TN. I am not surprised that he doesn't know about it. But more research is coming out and more literature should come out soon on younger people having TN. Just be glad you were diagnosed despite it.